Yes, I'm well aware "Lisybabe" makes me sound like a teenage girl. But I was when I chose the handle and it kinda stuck.

27 March 2014

♫... If you were me then you'd be screaming "someone shoot me"...♫

I've been trying to write a piece about Assisted Suicide (AS) for years. I've been collating links and quotes here and there. I've written the odd paragraph that's popped into my head. I've compiled statistics, made notes on documentaries and generally tried to write a well researched, fact-based post.

Maybe I'll actually post it some day. Today I'm not using quotes from other people about why they think legalising AS is bad; today I'm writing purely about my own thoughts and experiences. The rest of this post is behind a jump due to talk of suicide and probably other triggery things too.

Mental health care

For my next paragraph to make sense; I need to clarify some language. A lot of people think that "able-bodied" is the antonym of "disabled". It's not. "Able-bodied" is the opposite of "physically ill/impaired". There are a lot of people in this world who are perfectly able-bodied, but they are also disabled because of a learning difficulty or mental health problem. "Non-disabled" is the antonym of "disabled".

One of the main reasons I'm opposed to legalising AS is because I believe that mental health support services should be available to all. If an able-bodied person expresses a desire to kill themselves, they will receive mental health support; by force if they don't consent to treatment. I'm a big believer in equality and I don't think people with physical illnesses or impairments should receive second-class mental heath treatment.

And that's ultimately what assisting suicide is. It's saying "I'm not going to help you with your suicidal depression, have a lethal injection instead."

People think that it's only anti-choice right-wingers that oppose AS. Yup, that's me with my wacky right-wing beliefs that everybody should receive the same quality of healthcare regardless of whether they have a physical illness/impairment or not. My belief that we should not just provide healthcare, but also make it available to all, is just so right-wing.

I've thought about killing myself regularly over the last few years. I haven't actually tried it yet, but who knows what will happen as my life continues to get worse. On good days it's genuinely scary to think that, should I hit rock bottom, I'll get shoved 6 feet underground rather than offered a hand to get back up just because I have so many physical health problems that it'd be quicker to list the ones I don't have.

Pain

Most people cite this as the reason they'd rather be shoved off this mortal coil if they had a chronic or terminal physical condition. And the shame of it is that so much pain is unnecessary because of our culture's obsession with restricting pain relief.

I've had morphine on prescription since 2009. I was first prescribed it after an operation at the end of 2008. Once I'd taken it post-op, and tolerated it well, I was allowed to have it ongoing. Prior to that operation I had begged and pleaded for pain relief for years and been told that there was nothing stronger than tramadol available.

During the 3 or 4 pre-morphine years I'd considered killing myself several times. Not because I was as depressed as I am now, but purely out of desperation to make the pain stop. And it was totally unnecessary for doctors to make me suffer given that painkillers exist. I'm not unique; most people with chronic pain conditions get denied adequate pain relief. Denial of painkillers is one of the social problems I often talk about when explaining the social model of disability. We don't allow torture in our criminal justice system, so why does our culture insist on torturing people by withholding pain relief for the crime of being ill or impaired?

There are some days when I'm in so much pain that I take so much morphine that I eventually reach the point where the side-effects become more unbearable than the pain. On days like that I really wish that marijuana was legal because it would be another arrow in my pain-killing quiver.

My point is that I understand why people would rather be dead than in so much pain because I've been there. We need to fix the medical profession's attitude to pain relief, and the legal system's attitude to marijuana, rather than dealing with the problem by killing off the people that are in pain.

So far the only cut that's hit me is the cut to Council Tax Benefit. It cost me £65 last year which is something, luckily, that I can afford. But when I get moved from Disability Living Allowance to Personal Independence Payment there's the chance that I'll lose all help with getting around and/or help with daily living activities like cooking meals. And then I'll definitely lose help when they phase out the Severe Disability Premium under Universal Credit. Luckily both PIP and UC are subject to extreme delays because the government are so incompetent, but we'll get there eventually.

You might argue that in times of austerity that disabled people should be feeling the pinch too. But the difference between me and a healthy unemployed person is that I don't have the hope of one day getting a job. A healthy unemployed person knows that when the government stops throttling the economy and there are more jobs out there, that their financial problems will probably be over. That's not the case for me. A healthy unemployed person might be looking at not being able to afford a short holiday until 2020; but I'm looking at a future where I'll never get the chance to leave this miserable island ever again.

I've always wanted to travel and it breaks my heart that I'll never get to see all the places I want to see. I've wanted to visit Australia since I was a primary school-aged Neighbours addict. Yes I have health problems so I'd need to bank on spending a fair chunk of my holiday time stuck in my hotel room, but I hate the fact that I'll never get the chance to look out across Melbourne from my hotel room balcony rather than just watching Ramsey Street on my TV.

It's not just us chronics that are losing financial support for the most basic things. The news is full of stories of terminals too. Larry Newman and Cecilia Burns are just two of many people who were terminally ill, but had their benefits stopped anyway. And now the Lib Dem "care" minister wants to offer AS to terminally ill people. If I knew I had 6 months to live and I was going to spend that whole time worrying about money because the government had taken my income, I'd check out sooner. That's not the Lib Dems offering terminally ill people a fair choice about ending their lives; it's financially bullying people into dying prematurely by denying them enough money to stay alive.

"It gets better"

A few years ago "it gets better" was a campaign founded in response to a spate of gay teen suicides. Of course we should be talking gay kids out of killing themselves. Of course we need to tackle homophobia to make gay teenagers feel like they belong in this world. Which is why I find it so baffling that so many of the same people think that physically ill or impaired people should curl up and die rather than being given support to live freely, happily and openly.

It might sound counter-intuitive to say "it gets better" to someone with a progressive and/or terminal condition; because clearly their condition isn't going to get better. But when you say it to a gay kid you don't mean "your gayness will become cured;" you mean that your self-acceptance will get better and you'll find yourself surrounded with less prejudiced people.

Life has the same capacity to get better for disabled people; even terminally ill ones. Disabled people are so vilified in our culture that it's not uncommon to experience prejudice and shame when first diagnosed; the same problems a teen coming out faces. So many of an ill or impaired person's problems are caused by our society, like a denial of painkillers, a lack of adequate financial support or appropriate psychological support to deal with your issues. Just like a gay teen's problems are caused by living in a homophobic - or at least heteronormative - world and not getting support or counselling to deal with that.

If a gay teenager is rejected by his homophobic parents for being gay; we rush to support him and admonish his parents. But 20 years down the line when he gets diagnosed with Parkinson's Disease and his disablist husband leaves him our society says to the husband "I understand, it must've been tough" and says to the disabled man "yeah, it totally makes sense that you'd want to die." Why does our society only offer "it gets better" support in the first scenario and not the second? There's the capacity for him to meet a new husband who isn't a disablist fuckwit, why don't we push the potential for life to get better?

Someone I know died of MS-related complications last year. She'd lived with mental health and alcohol problems most of her life. In the last few years of her life she was sober and the happiest she'd ever been, despite being at her least physically able. It really can get better even when you're dying.

Isolation

This, along with money, has been my biggest problem in recent years in trying to find a reason to stay alive. Humans have evolved as a social species, and I rarely see other human beings in real life. Social media means my life is far better than if my body had been in this state 20 years ago, because I can have a conversation with someone on the opposite side of the world while I lay in bed with a bottle of morphine and Twitter open on my phone.

But interpersonal contact is so important, and it's so easy to get isolated when you're sick. I used to make plans to do stuff with people, but so frequently I'd have to text them on the day and say "too ill, can't make it." Eventually people stop making plans with you or inviting you to stuff.

Being isolated because you're ill is another one of those problems that doesn't need to come with being ill and is totally created by our society. I don't want people to read this, take pity on me and decide to befriend me. I don't want a woman to ask me out because she pities me. I can honestly say that I would rather die alone than be someone's pity project.

Fear of being pitied is why I hate talking about my mental health so much. I want people to view me as an equal, not someone they look down to and feel they need to look after because they see me as less than them.

That's the crux of my point really: Disabled people are seen as lesser in every way. We're so inferior that we're not worth dating. We're so inferior that we're not worth being friends with. And we're so inferior that our depression is seen as not worth treating and we'd be better off dead. Even when our depression is caused by a society treating us as less than worthy.

It's quite a neat trick actually. Deny us equality. Deny us support. Deny us friendship. Tell us constantly that we're a financial burden on the taxpayer and we're not good value for money. Then deny us mental healthcare for the depression you caused us and offer us a lethal cocktail to "end our suffering."

People say that the right to choose when and how you die is an important right. But within the current society there really is no choice. If we had a half-decent culture that treated me like a real and valuable human being then maybe I wouldn't spend so much time thinking about how my life is really not worth living. And I'm educated and politically aware enough to understand that all the sadness that's come with being ill is caused by our society. If you've just become sick I can see how it's so much easier to fight for the right to die than to fight for the right to really live.

My GP once asked me to talk to some trainee doctors about depression; seeing as how most mental health management is done by GPs rather than specialist psychiatric services.

I had to spend the time explaining how my depression is largely socially constructed. Certainly socially exacerbated. They'd never heard of the social model and how society treats us like shit. They just assumed that being miserable was a default component of having physical impairments/illnesses and had never spent a second considering that our lives don't need to be like this.

And these were trainee doctors. People who'll make life and death decisions if euthanasia is legalised. I spoke to two of them. What about all the other doctors and future doctors who'll never consider that disabled people's lives don't need to be miserable if only we got the care packages we need, got the financial support we need, got the access we need to participate equally, weren't bullied daily by a cruel world and weren't isolated by a society that thinks we're icky.

3 comments:

This post is amazing. Honest and thoughtful, and so, so true. So much of this rings true to me as well, and I only wish people understood half of this, whether we're talking about Assisted Suicide or just living with a disability. Thank you for saying it.